After a week in ICU following my 7th brain surgery, I was sent to inpatient acute rehab. Since they seriously work me here, this won’t be a long, deeply reflective post. I’m definitely “on the go” constantly here.
Nevertheless, I did think it was important to post about my experience thus far.
This is actually my 2nd stint in an acute rehab facility. In fact, back in 2017 when I had to be transferred to an inpatient rehabilitation facility my doctors tried to get me into this particular rehab. Unfortunately, there were no beds available and thus, I wound up in a very good facility. However, it’s nothing like this experience!
I’d say I’m currently in the “creme de la creme” of neurological rehab facilities. It’s pretty rare to have absolutely NO complaints about a healthcare facility these days. Yet, I don’t have a single issue and can only sing the praises of every single staff member. From the doctors to the men who clean the floors, everyone is truly amazing.
I’ve been here for two weeks now, and have another half week ahead of me. Okay. I am getting a bit tired of the same food options, but if that’s my only gripe-that’s pretty darn fantastic!
Before this last surgery, I could barely walk. I was in constant fear of falling, and for good reason. I was basically falling every day. I had no balance. I slept until noon, on good days! My body was so fatigued it took every once of energy to simply get out of bed. Then, I’d merely move to my couch. Let’s just say I blew through countless Netflix movies and series. Around 8:00 p.m. I’d be asking my husband to bring me back into the bedroom. I’d take a quick shower or bath, and I was done.
My day here includes:
•Wake up at 8:00 a.m. & eat breakfast
•Start physical therapy around 10 p.m. and work on balance exercises, walking with and without my cane (Yes!), using the treadmill, walking along the unit, etc.
•Speech/Cognitive therapy immediately afterward
•Lunch at noon
•Then, occupational therapy where I work out my weakened left arm through stretches and a state-of-the-art robot that measures my range of motion. It’s pretty cool, I have to say. We also work on “Activities of Daily Living” (ADLs) like how to step into the shower safely, cooking a meal or doing laundry. Now, I’m doing squats to pick things up and not dropping everything I put in my hand.
•Once my standard therapies are over, I can join a gym class, go to art therapy, and/or horticultural therapy (potting an array of beautiful plants and learning how to care for them).
I can achieve all of this before 4:00 p.m.! Prior to this surgery, I was barely able to function never mind participating in so many amazing activities before the sun goes down.
I’d never imagine eating dinner at 4:45, but it’s the early early bird special here!
By the time I finish dinner, it’s time to shower-up and start getting ready for bed. Who knows? Maybe this night owl just may learn to become an early bird… Realistically though, probably not.
It’s amazing what these dedicated professionals can do for people like me with such extreme neurologic deficits. It’s even more fascinating what they do for people much worse-off than me.
As I write this, I’m laying here in ICU…Still. Thankfully, it’s not an isolated ICU, so friends and family can come and go. Most importantly my husband is allowed to be here everyday, so the days go by much quicker than the evenings. My “estimated” hospital stay of 1-2 days following surgery No. 7 is currently on Day 7 with a “possible discharge to acute rehab tomorrow”. However, I’ve been hearing this for quite a few days now. Unfortunately with my case, this is no surprise.
It’s a natural question to ask, “How long will you be in the hospital?” However, I have learned the hard way to take that “estimated” time period with a complete grain of salt. It’s NEVER what they estimate!
Something always seems to happen; be it a simple revision of my skin graft (Surgery No. 4) when they unexpectedly found 3 separate bacteria in my skull bone, and what was only meant to be a one-night stay turned into a full week vs. when I was released the same night after they removed a small part of my skull that was totally unconnected to the rest of my skull and excised a wound on my scalp (Surgery No. 5).
So, here I am, alive but not so well, after Surgery No. 7.
Yes. I thank God I’m alive, and that I’m coherent enough to even say that. I recall most details of my other surgeries. However, all I can recall from the first few days after this surgery was the horrific, excruciating pain. Mostly I was in and out of a painkiller haze. Yet, when I was actually awake, the slightest movement caused intense, shooting pains throughout my entire body. Now, this chick has got a serious threshold for pain! So, when they asked, “On a scale of 1 to 10, how would you rate the pain?” and I could merely moan, “10” – you’ve got to understand just how severe this pain was.
Without getting into all the complexities of this 7th Surgery, I had a “shunt” or catheter placed into the area of my brain, where the tumors were removed and the radiation was beamed into where fluid would consistently flow. The fluid would sometimes cause increased swelling and thus, pressure in my brain. Now, with the shunt in place, the fluid will hopefully continuously flow out of the brain and be absorbed into the rest of my body. Science! It’s fascinating when you’re not the guinea pig.
I’ll have this shunt inside my body for as long as it holds up. It could be years, months. Again, who knows?
What I do know is that this has been one of the toughest, if not THE toughest surgeries so far. So, I hope and I pray that this will be Lucky Number 7 and I won’t have to see another Operating Room for a very, very long time.